Until the last breath: Exploring the concept of hope for parents and health care professionals during a child's serious illness

Objective: To investigate the concept of hope for families and pediatric health care professionals during a child's serious illness. Design: Eight focus groups. Setting: Academic pediatric medical center. Participants: Bereaved parents, pediatricians, pediatric residents, and nurses (N=39). Intervention: Participants were asked standardized questions related to their definition of hope, its role in medical decisions, and the benefits and detriments of hope in focus group sessions. Main Outcome Measures: We identified attributes of participants' concepts of hope using qualitative analysis of audio-taped sessions. Results: While all participants identified common elements in their definition of hope, parents identified their role as bearers of hope; it was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome. Some physicians reported difficulty in maintaining hope in the face of prognostic data; others acknowledged the importance of the family's hope. Nurses identified particular challenges around parents' decisions to continue treatment when it prolonged the child's suffering. All participants noted the changing nature of hope and its implications for care. Conclusions: The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication.